LL Lovelies, Lurkers and Fans - I need your help.

  1. You have chosen to ignore posts from a3888b5accef493a59715074b2eb8c72. Show a3888b5accef493a59715074b2eb8c72's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    I'm sorry to hear, Jbar.

    My brain guy at MGH is long gone.  I had my first one 20 years ago.

    However, my nephew just underwent brain surgery in March at Children's and he's running around like a terror now, only occaisionally using the brain surgery as an excuse to try not to go to school.  Let me get some names from my sister and I'll pass them on.
     
  2. You have chosen to ignore posts from TwoCentDonation. Show TwoCentDonation's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    {{JBar}}
    {{{JBar's niece}}}

    I will be keeping your niece and family in my prayers.  As for places to stay, there's also the Neely House.  I think they're close to Tufts Medical Center.

    In terms of alternative medicine I've heard that essiac tea is good, but it's a detailed regimen, and you can only get it in Canada :/  I've heard that if you use alternative medicine, MGH is good at working with you.  They just want you to let them know what you're using.

    Also, my understanding of how MGH and Dana Farber work with cancer is this: MGH takes a proven treatment method and perfects its execution.  Dana Farber is excellent at creating new treatments.  So, my guess is if it's a rare cancer or one that doesn't have many established treatment options, then Dana Farber is the way to go.  But, if it's a "standard" cancer, then you're probably good with either MGH or Dana Farber.

    I don't know much about the other hospitals.
     
  3. You have chosen to ignore posts from hsmbs. Show hsmbs's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Hi J- I will have to be in the offering prayers camp, since I don't know of any specialists... I'm so sorry to hear your sad news, keep us posted!
     
  4. You have chosen to ignore posts from Seebell. Show Seebell's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Oh JBar  - I will pray my heart out to the Good Lord, for your dear Niece.
    The fact is - BOSTON has the best surgeons IN THE WHOLE WORLD.

    MGH has the best surgeons around.

    I will ask around and know a few Nurses and ask their opinions.

    May the Good Lord make Molly completely tumor free soon.


     
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    Re: LL Lovelies, Lurkers and Fans - I need your help.

    There is a big range of brain tumors that aren't cancer. Most of them can be operated on very successfully but some of them are hard to get to without damaging the brain. That's where, as someone above noted, you want a surgeon who has experience in this exact type of surgery and a solid commitment from him/her that he/she will be doing the surgery and not just supervising a surgical resident.

    Anyway, please keep us posted, Jbar.
     
  6. You have chosen to ignore posts from irishgirl22. Show irishgirl22's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Hi there.... This is my first post- But I just was speaking to a family friend about this very cancer and what she used in her treatment and could not read your post and not comment.
    She was diagnosed and treated for her brain cancer using homeopathic means...She took a vitamin called poly-mva and swore by it- 5 mins after my conversation with her...I was clicking through LL and saw this...
    I am not not a earthy crunchy person but try to live and eat organically and just had to post...

    http://www.polymva.org/faqs.htm#a

    Wishing your family peace and healing thoughts Kate .
     
  7. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    You guys are just awesome.  THANK YOU for all of this.  I'm busily cutting and pasting all of your excellent ideas, and your well wishes, into a message for Molly's Mom and Dad.  Keep them coming folks!  Thanks to you I'm feeling more hopeful for her than I was when we first heard the news.
     
  8. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Irish, thanks.  I saw your post after my last post.  Her family are pretty crunchy and in fact live largely off the grid.  This sounds like something they'll definitely want to look into.
     
  9. You have chosen to ignore posts from Butterflyz. Show Butterflyz's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    JBar, I know someone who works for the neurosurgery department of BWH. They have just opened a new operating suite that incorporates intra-operative imaging (MRI, etc) into the OR suite. They have a number of unbelievable neurosurgeons there doing some amazing, cutting edge stuff, including destroying tumors that are difficult to cut out with lasers. The person I know, just witnessed that being done in a surgery last week. Please seek them out.

    Molly will be in my prayers.
     
  10. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    I will Betterflyz, and thanks for the lead!
     
  11. You have chosen to ignore posts from Kind-of-Irritating-Lady. Show Kind-of-Irritating-Lady's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    I second the BWH notion as well.  Their neurology department is spectacular.  They've been awesome with MS research and clinical trials... I know, not exactly brain cancer, but an uphill battle for doctors.  BWH/Lahey are both great in that regard.
     
  12. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    In Response to Re: LL Lovelies, Lurkers and Fans - I need your help.:
    JBar - If you know the type of tumor (i.e. glioblastoma, etc) that would be important as each type of tumor has its own prognosis, treatment and specialists.  If you can find out, I can find out who the "thought leaders" are for that tumor type.
    Posted by Inter-Planet



    Hey Inter-Planet, if you're still reading I just heard from my SIL. Can you recommend someone based on this?:  "Molly went in for a consult and she was told that it is an anaplastic astrocytoma grade 3 tumor.The MRI makes it look like a grade 2 but the path results make it look like a grade 3. The neurologist said that she needs to get surgery within 30 days. The danger of this type of tumor is that it spreads easily to healthy tissue and that they probably only be able to remove 90% of it. She will probably have to have radiation or chemo and it can reoccur. The good thing is that it is still self contained. She goes in tomorrow for a functional MRI."
     
  13. You have chosen to ignore posts from AlyssaJones. Show AlyssaJones's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    In Response to Re: LL Lovelies, Lurkers and Fans - I need your help.:
    And, AJ, if you're reading this. I'll think healing thoughts also for your Mom; we just put my sister with metasticized bc on hospice.
    Posted by Green-Mountain-Views


    Thanks GMV... I am so sorry ot hear of your sister.  My mom is doing pretty well, considering everything... she's a tough broad.  I'll send some good energy your sister's way as well.  HUGS to you and your family. 
     
  14. You have chosen to ignore posts from daveh7373. Show daveh7373's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    I do not have any experiences in this area but I do have a good relationship with the Lord so I will gladly pray for Molly and her family. If they do come to Boston for treatment, please let me know and I would be glad to bring them food and beverages while they are at the hospital. I am sure it will be daunting enough just to deal with the issue itself.
     
  15. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Daveh you are very kind, thank you!
     
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  17. You have chosen to ignore posts from justcat. Show justcat's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    JBar - my thoughts and energy are with you and Mr. JBar I am wondering how alternative you want to get?  I can recommend some very alternative therapy (PM me) if you want. 
     
  18. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Thanks again everyone for your support and advice.  Molly's undergoing surgery right now, at the Mayo Clinic.  Her best case scenario per the surgeon is that they will get most of it and she'll walk with a limp.  Mid-case scenario is that she'll lose any function in her left leg.  Worst case is that she'll be paraplegic.  Keep the good vibes going for her today.
     
  19. You have chosen to ignore posts from wizen. Show wizen's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Good luck to Molly - keeping her and you all in my thoughts today. 
     
  20. You have chosen to ignore posts from Another-Veronica. Show Another-Veronica's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Dear JBar,

    So sorry to hear about Molly.

    I don't know how much clout I have with God these days but I'm a believer in the power of prayer & faith.  I'll definitely add her to my list.

    Stay strong. Keep us posted.
     
  21. You have chosen to ignore posts from Kind-of-Irritating-Lady. Show Kind-of-Irritating-Lady's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    JBar, I'm keeping Molly in my thoughts today.  Sounds like she's in good hands at the Mayo Clinic.
     
  22. You have chosen to ignore posts from TwoCentDonation. Show TwoCentDonation's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    I'm sending good vibes your niece's way.... *fingers crossed*
     
  23. You have chosen to ignore posts from justcat. Show justcat's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    I also have a friend in Wisconsin who does energy healing - if you want her info, please let me know!  But I'm also going to send as much good energy to her as I can :)
     
  24. You have chosen to ignore posts from TheRealJBar. Show TheRealJBar's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    Thanks Justcat.  Her aunt (Mr. JBar's sister) is a healer and is on the case.
     
  25. You have chosen to ignore posts from LWhitt58. Show LWhitt58's posts

    Re: LL Lovelies, Lurkers and Fans - I need your help.

    JBar, you know I'm sending positive healing thoughts for Molly!  She's in the hands of some of the best doctors in the world at the Mayo Clinic.
     
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